Locked Away Like A Fairy Tale

A lost slipper, long tresses of gold, a sleeping beauty the story beholds.
Lost in a never ending wonderland, dreams awake and nightmares begin.

Just like a princess locked up in a castle tower, a wondering mermaid looking for her place between two worlds.
My story is no different than a fairy tale. Only a happy ending is still to be here.

Caught in a world of mass confusion. I suffer daily dis-allusions.
Living in a prison cell all my own. Locked up in my own body that's true imprisonment.
A blood disease, a curse, and no cure. I live in pain, both physical and mental.
Sometimes I think one wrong step will put me away for life, like they would come and get me and lock me up in a straight jacket.

If I told the world the real amount of pain I was in. They wouldn't know what on earth was keeping me here. They couldn't understand how I deal with the pain. Even I don't know how I get through the days. I can just count it all to faith. The power of God is mighty and the disease small.

Remember this next time you think your life is too tough. Most people don't know what true pain is, sheer horror that can only be felt inside, feeling like your blood is roasting you alive. Lost in a world of science fiction and reality, you never know just what to believe. So I turn to God as my only source of comfort in these things. Only God can save me from a horrible fate. I pray one day there is a cure and no other person has to suffer like I do. I pray that they find God if they are sick too.

Fusion

Infused by blood that's against me.
Tortured by pain that's inside me.
Bruised by others lack of understanding.
Stuck in a world that don't seem to care.
Trying to understand and make some sense of it all.
Falling through the cracks of my misunderstanding.
Wondering when this disease will be cured and quit plaguing me.

But knowing that God is always with me, and understanding that
He'll hold my hand and guide me.

My porphyria story - Sick Eyes

I have a rare blood disease called porphyria. There are eight different kinds of porphyria. I have one of the acute porphyrias called heredity coproporphyria. It starts in the blood with the heme and the heme makes porphyrins. People who have porphyria have too many porphyrins and that causes us extreme problems. I first had a porphryia attack after I started my periods. My periods was what brought on the disease. You can have porphryia and it lie dormant and you never experience symptoms until a trigger comes along. My trigger was my period. I use to have horrid periods where I would pass out and have sharp tingly knife pains all over my body, be dizzy, throw up, my blood pressure would drop really low and at times I was admitted to the hospital.It's hard to explain. But there is a lot of pain involved with porphyria. It causes stomach pain, back pain, side pains, just anywhere you can have pains from porphyria. And if you get something like the flu it will make the porphyria worse and it takes you longer to recover from it than normal people. Porphyria is a rare blood disease and needs to be addressed. Not very many people understand how porphyria works and how crippling it is. For me it's very frustrating. Because I have family and friends who do not understand what a struggle I go through on a daily basics. They wonder why I can't hold down a job, when I feel like crap and I'm throwing up my instentines. They wonder why I'm not normal when my blood produces too many porphyrins and my stomach hurts like a thousand stabbing knives. They wonder why I can't be on the fast track. I wonder why they can't understand my sickness why they can't see I'm trying my best. I try to go to school and I get sick and in the hospital. I try to work and I get sick and can't. It's very frustrating and annoying. I have no time for people who don't understand what I go through. And who critizes me over something I have no control over. I wished I could be normal and have a normal life, be graduated from college and have a job. But for me trying to get through each day is a challenge. The more I try it seems like the harder it becomes and I'm tired of people judging me. When I was a lot sicker than I am now, I had more attacks more often and I was really bad off. I always had faith that God could heal me. I prayed and prayed and went to the altar at church and the preachers prayed for me. And I know God has speared my life and let me live again. Well I kept going to church and being prayed for and one night while the preacher was praying for me I felt like an invisible hand reach down into my stomach and turn my insides around and make me whole. After that I stopped having as much problems as I was having. I stopped having the horrid periods I was having and I started gaining weight. I could never gain weight and I looked sick from the pictures I have of myself back then. I knew that God had heard my cry, and I knew that God had healed me. Well it wasn't the only time God healed me, He's healed me more than once. But anyways so for several years I got better, I was going to school and working part time. But then things got bad. God had healed me of death and healed me of my sickness.I thank God each day for healing me when He did. I just want people to know more about this rare disease and to understand how bad it can affect people. It's not easy living with something that is crippling and causes you to hold back on your life. While the world goes on around us were stuck sitting on the sidelines while the rest makes fun of us. If you had my disease you'd understand how I feel. Until the day that God completely rids me from this disease or calls me home I still have it. And want the world to know porphyria is no laughing matter.

Porphyria the unkown disease.

Porphyria is a rare disease that starts with your blood. There's a substance in your blood called heme that makes porphyrins, somehow porphyrins contribute to blood flow. People with too many porphyrins have porphyria. Porphyria causes a lot of different problems. There are eight different types of porphyria. The main ones are the acute porphyria's. In these porphyria's there is severe abdominal pain, I like to explain them as sharp stabbing knife pain, or like having an operation without the anstethia. It's not little stomach pain, it is at times intense unbearable pain. Then they have sensitivity to the sun. Something about the rays of the sun affects people with porphyria. I have porphyria myself and I know that when I'm out in the sun too long I start to feel strange and I can't think clearly and I start having the stomach pains. It brings on a whole new world of pain and sickness. Also there are mental side effects and nervous system affects. Such as worry, fear, and nervous side effects, like panic attacks. Thankfully I know a God who heals and has kept me sain throughout all these years. I use to get a horrible fearful feeling that would come on all of a sudden and I'd feel like the world was coming to an end or like I was going to die right then and I'd be hysterical. I'd wake my mom up at night and have her pray for me cause I was so hysterical. Also I have a lot of anxiety and panic attacks. I get real frustrated and start feeling all anxious and then I start hyperventilating and feeling hysterical. There are a long list of medicines that porphyria people have to stay away from. Also there is other triggers such as sun light, smoking, alcohol, and certain foods (which may be different in each person) that will cause attacks. Menstrual cycles for females will cause attacks. Mine were horrible. Right now my periods are all messed up and I don't have a period. But when I use to I would pass out, my blood pressure would drop really low, I would have horrible pains all over my body, Not a place in my body didn't hurt, I would throw up and be dizzy when concuss. It was horrible and on occasion I have been admitted to the hospital because of my periods and I passed out in the doctors office more than once. There's a lot of things that can go wrong with porphyria. Most people do not understand what it feels like or what people with porphyria goes through on a daily basics. It's difficult to see friends and family who live successful lives and don't understand our circumstances. When were trying our best but are shot down by our own blood making too many porphyrins and causing us to have horrid pain beyond description and panic effects. And they wonder why it's hard to hold down a job and rise to the top like all the other successful people do.

Living with Porphyria

Well I'm 26 years old and I've been dealing with a rare disease called Porphyria since my 7th grade year. My stomach hurts a lot. It's hard to put things into perspective when your seeing a thousand different possibility's for your life. It's like being in a crowded room and seeing no one. It's a horrid disease and I have a hard time coping with it. I pray and take it all to God, and if it wasn't for that I think I would truly be mad already by now. But this is a unique disease, it has to do with the blood and heme in our bodies, mine produces too many porphyrins aka leaving me with porphyria. I don't understand this disease. It's the worst. It's like an obssesion that you try so hard to push out but won't go away.